what is this? Update - post 107/Completely Healed!

[breezy1077]

Why tomorrow???? ERs are open 24/7.

Stubborn, stubborn man . The pain is better this morning, but the nausea has kicked in - weird that he's getting the side-effects in stages. It could be from all the oxycodon that he took yesterday too. He's going to rest for at least half a day. I think if the pain's going away - the leak's probably healing. Just taking it's time doing it.

Thanks for letting me "get this stuff out" on the boards. What we are going through is frustrating, but we also know to count our blessings. There are so many folks going through much worse and my heart goes out to them. The significance of that is not lost on me. I am happy that it's not ALS, and so is DH - for that we are grateful. And I am grateful to have all of you who take the time to care so much.

 

[breezy1077]

Well, I spoke too soon again today too. He got up and is having tremendous neck pain with nausea. He called the Dr. and the hospital - both said that they're almost certain it's not a reaction to the spinal tap because it's not a headache, it's neck pain that radiates down both arms.

DH thinks he pulled something or slept wrong, but he says it's like nothing he's ever experienced b4. It's horrible to have something chronically wrong because we're finding out you can't distinguish what's related or unrelated when you don't know what's wrong with you to begin with.

 

[dee47]

Is his neck stiff? does he have a fever? even if the answer is no, it ay be worth dragging him to the ER if he's in that much pain. The nausea can be meds-related, but than again, like you said, it's hard to tell with everything else that's going on...

Argh...I really wish I could do more for you! Here's another virtual hug.

 

[breezy1077]

Is his neck stiff? does he have a fever? even if the answer is no, it ay be worth dragging him to the ER if he's in that much pain. The nausea can be meds-related, but than again, like you said, it's hard to tell with everything else that's going on...

Argh...I really wish I could do more for you! Here's another virtual hug.

He said the pain in his neck is like having a muscle cramp (like the kind you get in your legs) but it never goes away. I don't think the nausea is meds related because he's been nauseous all day. And like I mentioned before, the pain in his neck radiates down both shoulders and arms and stops at the elbows.

He's called the Drs. twice today and the hospital once - everytime they said it couldn't be related to the lumbar puncture because he didn't have a headache with the neck pain. He's going tomorrow whether it's related or not. I cannot get him into the ER b4 that - all he had to hear is that it's not related and he rationalizes it away by saying they're not going to do the blood patch anyway if they think it's unrelated. Maybe he's right. But he also doesn't want to lay in bed writhing in pain for another whole day either. Ugh....thanks for the hug Dee.

 

[annrae]

He said the pain in his neck is like having a muscle cramp (like the kind you get in your legs) but it never goes away. I don't think the nausea is meds related because he's been nauseous all day. And like I mentioned before, the pain in his neck radiates down both shoulders and arms and stops at the elbows.

He's called the Drs. twice today and the hospital once - everytime they said it couldn't be related to the lumbar puncture because he didn't have a headache with the neck pain. He's going tomorrow whether it's related or not. I cannot get him into the ER b4 that - all he had to hear is that it's not related and he rationalizes it away by saying they're not going to do the blood patch anyway if they think it's unrelated. Maybe he's right. But he also doesn't want to lay in bed writhing in pain for another whole day either. Ugh....thanks for the hug Dee.

Hi: I hope your DH is feeling better tonight. This must be so frustrating for you. Hang in there and hopefully they will find a reason for all of this.

 

[dee47]

Hi Breezy -- just wanted you to know I'm thinking of you guys. How's your hubby today?

 

[breezy1077]

Hi all! Brace yourselves - I'm gonna vent a little...

So, after spending hours today in the ER (we went to the new hospital 5 min. up the road rather than the one he had the spinal done at) - we find out that he does need the blood patch - duh, after writhing in pain for most of the morning - we kinda figured that out. But, they didn't know why the other hospital and the neurologists office didn't schedule one. They REALLY didn't know why they both suggested the ER. The ER Dr. said that it's a scheduled proceedure not an emergant one. He said that the new hospital would be stepping on the toes of the other one if they did the proceedure there and that the anasthesialogists wouldn't take the risk of the proceedure if he's not scheduled for it. He was a cool doc and called in a favor to see if DH could have the proceedure done there - he hinted that if the narcotics he gave him took all the pain away - they wouldn't do it. Ok, we get it....question: is there still pain - answer: yes.

So what did DH do - uh no, not hurting. First I kicked the bed, then I mentioned that DH's pain is always low if he's lying down - it's when he sits or stands up that the pain shoots to a level 10 (which is where DH leveled the pain when admitted). So they sit him up and after about 30 seconds ask where it's at - level 3 he says. The Dr. says to call the other hospital to sched. the proceedure - he could only do it if the pain was still bad even after the narcotics. then he leaves. DH stays sitting up and starts complaining about the pain again. I ask where it's at - he says a 7 - and it really was. It didn't matter they just told him to not sit up or stand until tomorrow. And sent us home.

I'm soooo angry with the first hospital and the neurologist. It was sooo obvious that it was a spinal headache/reaction. The neurologist's office even told DH that it was probably just the stress he was under waiting for his results . That one still angers me. Uh, hello - we can't wait to get the results - we're not the kind to stress out over fear of them. The ER came to the conclusion right away that it was a reaction. All they had to do is hear what DH had experienced since the procedure and what especially gave it away was the positional pain - smaller pain lying down, HUGE pain when sitting or standing up.

Oh well, thanks for letting me vent. Again, we know things could be much much worse and are for so many. Just frustrating because I'm starting to wonder again if we have the right neurologist. DH asked for a list of everything they've ruled out or tested for. The neurologists office refused to even give us a list of what they've tested for. Instead they scheduled an appt for the DR to go over everything with us. I'm sorry, but that really just sounds like they only want the money. Otherwise, they'll just send us his medical records and let us try to determine what they've done. Ugh.

Long story short (I know...too late! ), DH's blood patch procedure is sched. for noon tomorrow. And the Neurologist's appt to go over new and old test results is the 30th.

 

[annie1995]

I'm so sorry your DH and you have to cut through all this red tape just to get the blood patch done . I know exactly the pain he is feeling. I had a wet tap when they did my epidural and I ended up with a spinal headache for a week. The Dr's didn't believe I had one and sent me home. I ended up going back in a week later and getting the blood patch done and walla, no more pain. Did they tell your DH to drink caffinated drinks? I'm not sure if he is able to or not, but that is supposed to help too. GL tomorrow, he should be feeling a ton better shortly afterwards. I'll be thinking of you guys.

 

[breezy1077]

I'm so sorry your DH and you have to cut through all this red tape just to get the blood patch done . I know exactly the pain he is feeling. I had a wet tap when they did my epidural and I ended up with a spinal headache for a week. The Dr's didn't believe I had one and sent me home. I ended up going back in a week later and getting the blood patch done and walla, no more pain. Did they tell your DH to drink caffinated drinks? I'm not sure if he is able to or not, but that is supposed to help too. GL tomorrow, he should be feeling a ton better shortly afterwards. I'll be thinking of you guys.

Thank you! and Yes, he's been drinking tons of caffine.

 

[Mackey Mouse]

Hugs, hugs, hugs.. I am getting so angry with all that your DH is going through, I could just spit..

Breezy, you keep pushing, and as far as the other hospital is concerned, I am not sure what I would do...of course it is related to the spinal tap... disgusting how they mistreat people..

Hugs, hugs, hugs... and you know what what he is going through is just as bad as what some of us are going through.. the unknown is sometimes worse than the known......hang in there.

 

[dee47]

You know, you never said on the boards before that the pain was getting worse when he stood up. If you had (maybe I missed it, I was swamped with my inflammatory breast cancer article) I would have told you right away it is ABSOLUTELY related to the spinal tap. How could they have told you otherwise? Any moron with minimal knowledge of medicine knows that pain in the head or neck, which gets worse upon standing up and starts after a spinal tap is a leak that needs patching! ARGH!!!!!!!!!!

Seriously, which hospital are you going to? I forget where you live. Maybe it's time to chose a hospital in a different STATE. The incompetence and BS you guys have encountered so far are not funny. You should insist on getting your records and go...someplace that has real professionals.

I'm done ranting. Sorry. I think of you all. Keep pushing!

 

[Mackey Mouse]

I do not remember what hospital she is going to either Dee.......but can I say this.

I live in a resort area, we have two hospitals.. there would be no way they would be treating my husband. We go to one of the best teaching hospitals in Boston for his treatment etc. Now we could make our life easier by having treatment down here, but I have seen the treatment down here. I was horrified at how dirty the treatment center was for chemo. I watched them suit up themselves and yet sit people down at chairs where the previous person had sat having iv treatment and not wipe the area down... never again for him. In Boston, I watched them scrub each station after the previous person was done having treatment. With chemicals and the possibility of blood being spilled, that is the way it should be.

I am just saying this if you are going to your local hospital vs a big teaching one you sometimes sacrifice on treatment.

Hugs Breezy, you keep pushing, but I am getting annoyed here with the lack of good treatment for your DH.

 

[dee47]

yet sit people down at chairs where the previous poster had sat

LOL Macky, you know you're addicted to the DIS when everyone is "the previous poster," even in a chemo treatment center...

 

[breezy1077]

LOL Macky, you know you're addicted to the DIS when everyone is "the previous poster," even in a chemo treatment center...

thanks for the chuckle.

I've been afraid to post the good news (because everytime I post that he feels better - he gets worse again ), but he felt better today so he cancelled the blood patch. He's even gotten up a little today - and any other day that's been impossible. So....

Thanks everyone! Now we just need to figure out what this is.


Dee, the hospital he had the spinal at was Riverside Methodist in Columbus. The ER was the new Methodist Hospital here in Dublin, and the neurologist is from a group here in town. If they don't find anything, we're seriously considering the Mayo Clinic (or at least I am - DH would still need convincing )

I'll keep y'all posted about the results appt on the 30th. Thanks all and God Bless!

 

[Mackey Mouse]

See what happens when you type and you are upset over what is happening to someone else and then add in the tired factor......I fixed it, but did laugh. Yikes, see where my mind is, the Dis is such a part of my life, I even talk Dis.

Hugs......and Breezy, keep plugging, I am glad that he is having some good days...

PS.. to self, always reread slowly what you type.

 

[disneyloveNY]

Can I just make a suggestion? I am a physician from an excellent teaching hospital in NY. We often take care of patients that have already been treated at other local hospitals and....
Please, Please, Please take him to the Mayo Clinic to get a second opinion. However you can convince your DH, get him there.

 

[kimis]

Hi Breezy1077 I just read your posts and I wished I would have read them so much earlier. I am going through the same symptoms as your dh, even the cell phone vibrating on the hip area!
I finally went to the gp in Feb after I couldn't move my arms one night in bed. He said I probably had MS and sent me for a brain MRI. It didn't show any MS but he sent me to a neurologist with my films in hand.

She really listened. I told her that I never go to doctors on a regular basis and she would think all of this was in my head because the symptoms are all the time ( although they were getting more frequent). She said she never thinks it is in the head and she searches until she finds the cause. That was a sigh of relief for me. She said that many diseases imatate MS and she would check for all of them. She ordered two more MRIs right away. They were thoriac and spine. She also ordered a ton of lab work. From the time I had the tests done and when I went back for the results my symptoms had gotten worse. I had also devolped "clonus" which I had to look up. LOL It was shaking in my knees and arms (not parkinsons). When I showed it to her she said oh that has gotten worse. I said what this just started. She replied that no she had noticed it at the first appointment and she showed me her report from my last visit. I felt so relieved that finally someone was seeing what I had been feeling.

The test results came back. She said she was not ruling out the autoimmune diseases yet until I got my neck fixed. Apparently between C5-C6 disc the area is a mess. It is a herniated disc that has moved into the spinal cord, causing the spinal cord to be deformed. The doctor went on to explain that may be the cause for all of the symptoms but she didn't know. SHe said she doesn't usually see discs that bad (remember I am slow about going to doctors). She said at this point the only thing to fix it would be surgery. She said she isn't fond of surgery and hardly recommends it. I asked her about a chiropracter and said NO!

I was sent to a neurosurgeon who agreed the only way to fix it at this point was surgery. No shots, and diffently not a chiropracter.

The strange thing is that my neck has been hurting for the last two years but I didn't mention pain as one of my symptoms when I went to any of the three doctors. I figured I am 51 and out of shape so the pain must just be life and I would live with it. I thought everyone woke up during the night to readjust their pillows. LOL

I am sorry for the length of this but when I read it is was like reading my own story. My surgery is this coming Monday morning and I am going into the surgery expecting the symptoms to be gone soon.
I will continue to pray for all of you and you hope you get answers.

 

[breezy1077]

Can I just make a suggestion? I am a physician from an excellent teaching hospital in NY. We often take care of patients that have already been treated at other local hospitals and....
Please, Please, Please take him to the Mayo Clinic to get a second opinion. However you can convince your DH, get him there.

Thank you - I'm going to do my best.

Hi Breezy1077 I just read your posts and I wished I would have read them so much earlier. I am going through the same symptoms as your dh,.

Thank you for posting! I've had a sneaky feeling that it might be spine related. They have yet to do a MRI of the spine - which I'd like to see done. We'll see what the doc says on the 30th.

I'll keep you in my thoughts and prayers regarding your surgery and condition. Let us know how the surgery goes. I'll be thinking about ya.



MackeyMouse, you and your family are still in my prayers. Remember to take care of yourself too!

 

[Mackey Mouse]

We are enjoying the Summer here on Cape Cod.. thanks Breezy, after the summer we will be starting treatment, but for now.. we are so good.. Hugs and thanks..

I gasped when I read they had not done an MRI of the spine... sorry, I did. I would think they need to get moving on this and thanks to the physician who came on and posted here and said do the best you can to get him to another hospital.... truly, it sounds like you have to go where the big guns are and try to get answers.. I know you are doing your best to get DH to agree with this and we are praying that he hears you..

Like I have said before, I think Tom would agree with having treatment here where we live, but I have said absolutely no way for the reasons I have stated before. NO WAY..and so we ride into Boston, we live in an apartment in the house he grew up in, picture the 1950's, but we are grateful that we have that option....I have made it comfortable for us....he has his TV... we have the computer, and a bed, what else do we need...basic kitchen and comfortable chairs.....we stay there..

I know that at MGH if you sit with a hospital social worker, they give you options for places to stay that are reasonable for people who have to come from far away for treatment.. I am not sure how far you are from some of the better teacher hospitals, but it is something you might want to look into if you need to.

 

[breezy1077]

Well, I thought I'd have an update for y'all today since DH was supposed to go see his neurologist yesterday, but he refused to go. So, I'm going to have to convince him to keep going.

Wish I had more to tell you. Hugs to all!!!